This is a quick reality check on actually living with cancer and chemo side effects. Be prepared.
Even on this lowest dose of eribulin, I have begun to experience more significant side effects. I was constipated all weekend, which I thought was due to too much turkey and stuffing and not enough fruit and vegetables, but turns out is prevalent in fewer than 29% of people taking eribulin. I always keep some Senokot-S® on hand (it contains senna, which helps move the bowels) and it helps soften stool.
My hair has begun to come out. I think this was true of 45% of eribulin patients, and clearly I am in that group. It started thinning a few days ago, so I had it trimmed to be more even. This morning in the shower, much more hair came out that in the previous days. Since I get the next chemo dose on Wednesday, by next week I might be pretty much hairless. Thank goodness I had those eyebrows tattooed! At least I won't look completely like a bald egg (or a male version of myself with a significantly receding hair line).
The neuropathy in my feet has gotten a bit worse but not terrible, except late at night. I think I am more aware of it at night because I'm not as busy. Reading a book, watching TV or snuggling with Rik and Bobka don't distract as much from the pain and numbness in my feet as doing chores or cooking.
On the glass half full side, the sun is shining today and Bobka and I walked 20 blocks to the bank and drug store despite my neuropathy. It was lovely to be in the sun after some torrential rains this past week, and I am glad that I didn't let the pain in my feet stop me.
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Jill, this comment doesn't really have much to do with this particular post (although sorry you are having side effects)....I recently came upon your blog (not sure how) and after reading through much of it over the past few days just wanted to say that I really admire you, love your writing and your honesty and wish you the best of health in the new year. Hope the tumor markers continue to decline and the brain mets stay away!
ReplyDeleteI am a 48 year old (almost 49) survivor of stage 1 BC (diagnosed in 1997 at at 33). I had a mastectomy plus 6 months CMF. I live in NYC. Like you, I was diagnosed with Lymphedema shortly after completing treatment. After a long flight to Paris (no one had told me to wear a sleeve), my arm blew up which is clearly what triggered it. I have it in my left arm and hand, wear a sleeve and a glove and have wrapped and gone to PT and tried a pump and everything else over the years. I hate it.
I just wanted to commend you for writing so honestly about lymphedema and letting people know how tough, frustrating and depressing it is. I have also BTDT a million times with ripping off all my wrapping in the middle of the night and waking up to a pile next to me. Although I know quite a few BC survivors (and have lost too many BC friends as well), I know no one "in real life" who has lymphedema and it helps to know that someone else is experiencing the same things. I will definitely ask my provider about the JoviPak so thanks for the tip on that.
Just wanted to let you know you have a new fan. In addition to admiring your writing and candor, I also admire the way you live your very full life esp. in the face of Mets. (I am not Jewish but also like your interesting stories and facts about Judaism and cooking, including your recipes!) I will be thinking of you and praying for your health.
Warm Regards,
Carolyn Kelly
Carolyn, thanks for your comments. Although I started this blog to keep in touch with family and friends, it warms my heart to know that others are finding it helpful.
DeleteI've had lymphedema for 14 years and it's been both bad and good over that time. Right now it's okay, so I'm not complaining (much). I too hate having to wear something every night but the JoviPak keeps my dominant hand free during the day, a choice I felt comfortable making. I'm extremely compliant with self-masssage daily too and that seems to help. I also lift 8 pound weights daily as part of my LE management routine.
Best of luck to you in managing this lingering side effect of your cancer surgery, and I hope you never have to deal with anything else cancer-related again.
Jill